Sunday, June 30, 2013

Little Moments of Joy (In the Midst of a Very Hard Time)

I want this blog to be a happy place. 

My focus is on family life, and that is beautiful and joyful.

However, in the midst of all this beauty and joy, I am losing my mom to dementia, and so I need to write about that, as well.  It's just this constant ache in my heart.

I've been kind of surprised and extremely grateful at how many people care about how my mom is doing.  I receive emails and phone calls and questions in passing from those who read this blog, and the first question they always ask is, "How is your mom?"

Sometimes I wonder if I should post less about her--because I don't want this blog to be a place where I sit down and cry into the keyboard.  But what I'm thinking is that because everyone is going through something hard and because I have absolute assurance that the Lord is with me through this process, if I can write about it in a way that reflects my hope, then maybe those who read this will feel greater hope in their lives, as well.

Anyway, those are my thoughts this morning. 

And the best way I can think to provide an update is to share what our day was like last Thursday.

My parents live by the beach, and now that it's summer, I take my children to the ocean before we go to visit my mom. 

Here they are by the pier . . . at the beach where I spent all my summers as a child.



Piling their boogie boards with all their gear and dragging them across the sand . . .


We arranged to meet my dad there for an hour or so before he headed up to the rehabilitation center to see my mom.  I love this man.


We all went swimming in the ocean (perfect temperature), and I got to boogie board alongside Alia, Grace, and Spencer.  Sometimes Grace or Alia would catch a wave at the exact same time as I did.  We would give each other high fives during the ride into the shore.  Spencer thought it would be fun if he rode on my back while I caught the waves, and we laughed at how slow and awkward we were.  There were several times I would catch a great wave and then look up at my dad on the shore.  He would smile and give me a "thumbs up"--so happy to see me and the kids having a great time at his favorite place.  It was sweet.

For awhile, Ethan wanted to rest on the sand and play Legos with me.  I got to be the police officer at the gate, and he was "the bad guy" trying to escape:


Then I took some photos of Alia, Grace, and Spencer enjoying the waves:


Spencer makes all of us smile:


On the way back to the car, Grace, Ethan, and Spencer wanted to get a gumball from this awesome machine they have on the corner.  At first I thought, "Oh, we're in a hurry.  We can get a gumball later."  But then I realized that 75 cents in gumballs would probably mean a lot to my children.  I was right.


This main street is one of those comforting places from my childhood.  My dad would always take us to get a little candy or an ice cream after the beach, and I always felt so special to him.


While my dad was visiting my mom at her rehabilitation center, I took my children back to my parents' house to get everyone showered.  Here is the brand new ramp my dad got installed:


I can't even tell you how relieved I was to see that.  We've been fighting with those stairs for years as we've tried to get my mom in and out of the house, and this is going to make things so much easier.

After everyone got cleaned up, we drove to my mom's new rehabilitation center.  It's in a safe, lovely neighborhood, and I was excited to see how nice it looked:


My dad was in the therapy room with my mom, who was mostly asleep while she tried to go through the exercises.


I hugged her and kissed her and said, "Hi Mom!  It's April!"


She didn't say very much, but when Alia was taking pictures, she opened her eyes for a second. I am so grateful we got this photo:


When my dad went home for his nap, the rest of us went out to the courtyard so my mom could rest awhile longer.  The children read books and listened to music, and I reclined in a chair and just held hands with Mom.  (Grace was practicing her photography. Thank you, Grace!)


I can't even explain how much it means to me to just be close to her.  I know she won't remember that we were there, and I know I don't do much for her while I'm visiting, but holding her hand is healing for me.

When she woke up, we went into the activity center, and Alia and Grace found a chess board.

Now you've got to understand that my mom was amazing at chess.  It was one of her passions.  Up until about a year ago, she taught weekly chess lessons to a 90+-year-old woman in her church congregation. 

We got the board set up, and since I never learned to play, I thought maybe my mom could teach me.  But she was quiet when I asked her to tell me the rules, so I read the instructions from the box.


After I learned the basic instructions, I made my first move and said, "Okay Mom!  Your turn."  She sat and stared at the board and then started joking, laughing, and talking about other things.  

Wanting to direct her attention back to the game, I helped her make her first move--and a couple of moves after that.

At one point, I said, "All right, Mom, you make a move yourself now."  So she picked up one of my pieces and "kinged" her bishop.


"Don't you think it looks pretty that way?" she smiled. 

I stopped for a moment to see if she was serious.  And she was.  She couldn't remember a thing about playing chess. 

That shouldn't have surprised me, but it broke my heart. And then the rest of our visit went steadily downhill. 

The nurses brought in her dinner tray, but she refused to eat it because she wanted to get in the car and drive us all home.  I sat with her for about an hour, trying to get her to eat a few bits of her rice, meat, green beans, and mandarin oranges.

"But I have to pick up my children!" she repeated over and over.

"What children, Mom? All your children are grown.  You're just fine.  You don't have anywhere to be.  We just need to help you get better so we can take you home."

"No, I must get in the car right now.  I need to get Page." she would insist.

"Mom, Page has four children now and lives in Utah."

We went back and forth like that, and then I asked, "Mom, do you know where you are?"

"Yes, of course I know where I am."

"Where are you?" (I asked as gently as I could.)

Then she paused for a moment, put her head in her hands, and started to cry.  "It's just so hard," she whispered.

Then for the next half hour or so, she was in a panic--so anxious to go home, so upset that we wouldn't let her, so confused about where she was or what she was doing or where she was supposed to sleep. 

Most of the staff had left for the night, and the nurse assigned to my mom was helping another patient.

"Just park her there in the hallway, and I'll get her to bed in a little bit," she told me.

My children were tired, we still had an hour drive home, and I couldn't stay there any longer, so I had to do as she said.  But even as I was leaving, I could hear my mom calling out to everyone who passed by her--begging them to help her out to her car so she could get home--home to her children who aren't even there.

I left sobbing, with Grace and Alia putting their arms around me and saying, "It's okay Mom.  Please don't cry." 

So I pulled myself together and then we stopped for ice cream and made our way home.

Sometimes I wonder if it's helpful for me to visit at all.  She doesn't remember seeing us, and she gets so agitated when we're with her--refusing to help her find her car because she doesn't remember where she parked.

It would be easier on so many levels if I stopped.

But then I think about how this time is binding my children to their grandmother.  I think about how I feel when I hug and kiss her and say, "It's okay Mom.  I'm right here.  We're going to get you home."

And I look at pictures like this one--taken during our "chess game":

 
and I think that maybe these little moments of joy--for us and for her--are worth it after all.  

The Lord is aware of our struggles.  He comforts us in time of need, and He provides experiences that help us to grow.  I'm clinging to Him right now, and I can honestly say that in the midst of the hard, hard moments, He has the power to make life sweet.  For me and for you.  I love and honor Him.

Gratefully yours,
April

16 comments:

  1. I love and appreciate this story, this scene from your life and your heartache and your hope and your struggle. The beauty in the midst of the sadness and pain. My heart, thoughts and prayers are with you. Angie

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    1. Thank you so much, Angie! I appreciate your thoughtfulness and concern. It helps!

      Hope you and your family are doing great this summer.

      xo

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  2. April, the photos you captured of her smile are BEAUTIFUL!! I am sure in how hard this must be for your mom too, there are moments of joy and peace. I am grateful you are willing to share your experiences and even more importantly turn to our Savior for strength. Love you!

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  3. I am so sorry for your heartache. I really think that while your mom's mind or memory may not recognize and remember these times, her spirit surely will. And she will take them with her when the time comes for her to move on. And she will treasure them. Thank you for sharing your private struggles, what an example you are! Life can be difficult.

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    1. Shannon, that reminder about her SPIRIT remembering these things has been really helpful to me. I'm hopeful that she'll be able to look back on these years that she "missed" and see how she was cared for by all the people who love her. Thank you for your comment!

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  4. oh April I just cried reading that. It's so hard to go through and made me remember all the time my mum spent in hospital.
    You will remember all of these little things, I wish I had taken more photos of my mum but she just looked so different as time went on. Some of the photos you have taken are so precious
    take care, keeping you all in my prayers and your beautiful mum
    Corrie:)

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    1. Thank you, Corrie. I can only imagine what you went through seeing your mum in the hospital. Thank you for pointing out what a blessing it is to be able to take photographs. And I appreciate your advice, as someone who has already gone through this. Hope you are doing well! Alia and I love following you on Instagram, and the other day she made her first doll, and she said, "This is so hard!" You are such a talented lady!

      xo

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  5. It is helpful April! For your mother and for you. No regrets! You'll never ever regret the time you spend with her even if she isn't totally aware but you will regret not visiting. I didn't visit my mother enough because of who I had to go through to see her. I regret it every single day. Now it's too late. I can't go back.
    You look like your mother you know. You both are very beautiful. She's so lucky and blessed to have you for a daughter. xoxo

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    1. Cathi, thank you so much for your perspective. I feel so strengthened by those who have already been through this and who can give me the advice I need. I think you are absolutely right. Even if these visits are emotional (and draining), if I DON'T visit, I will wish that I had. I'm so sorry that you've lost your mother. Thoughts and prayers are with you.

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  6. Your mom has always been one of the very bright spots in my life. Her love for me helped me through some really rough times.
    Her love for your dad and your family makes me want to be a better person.
    I want to be like her "when I grow up".

    I agree that those precious moments are worth the hardship and heartache. I wish I could do more than love you all from afar.

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    1. Thank you so much for your kind words! I love hearing how my mom impacted others' lives, as well. It helps me to know that even though we don't want to lose her, she has lived a full, purposeful life! Much love to you!

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  7. Oh April--such a touching post. I am touched continually by your love and tenderness towards your mother. I have no experience to help advise your through this, but I absolutely believe you will never regret these visits, no matter how difficult they are. What a beautiful, admirable mother/daughter relationship you have with your mother, and are now repeating with your daughters. Well done.

    PS-I can't believe she never taught you to play chess when it was such a passion of hers.

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    1. Thank you, Tiffany! And yes, I should have asked her to teach me chess. She tried a couple of times, but I didn't like it. :)

      Hope you're doing great!

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  8. What an incredible trial. But what beautiful memories you captured with your children that day. And they will remember her more from the stories you tell. She must be one incredible woman to have raised such an amazing daughter. When I first read about your mother I thought that's the kind of mother I wish I could be. And thanks to you I feel like there are more resources and encouragement for moms everywhere. Thank you so much!

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    1. Thanks so much for your kind words. I love to know that my mom is having a positive influence. And you're right--as we tell stories about those we love, our children really come to know them well. Thank you for your encouragement!

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  9. I have no words of wisdom, but you are inspirational in how you are dealing with this and the lessons in compassion you are teaching your own children are amazing! Hugs to you, thank you for sharing your heart with us!

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